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#pkulife — Public Fediverse posts

Live and recent posts from across the Fediverse tagged #pkulife, aggregated by home.social.

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  1. International PKU Day today and the start of the summer holidays for our youngest child and PKUer. So she’s double celebrating with a pack of Wotsits and 6 Rowntree’s Randoms while bingeing Star Versus the Forces of Evil. #PKU #PKUday #PKUday2024
    #PKUlife #PKUdiet
    espku.org/projects/pku-day/

  2. International PKU Day today and the start of the summer holidays for our youngest child and PKUer. So she’s double celebrating with a pack of Wotsits and 6 Rowntree’s Randoms while bingeing Star Versus the Forces of Evil. #PKU #PKUday #PKUday2024
    #PKUlife #PKUdiet
    espku.org/projects/pku-day/

  3. International PKU Day today and the start of the summer holidays for our youngest child and PKUer. So she’s double celebrating with a pack of Wotsits and 6 Rowntree’s Randoms while bingeing Star Versus the Forces of Evil. #PKU #PKUday #PKUday2024
    #PKUlife #PKUdiet
    espku.org/projects/pku-day/

  4. International PKU Day today and the start of the summer holidays for our youngest child and PKUer. So she’s double celebrating with a pack of Wotsits and 6 Rowntree’s Randoms while bingeing Star Versus the Forces of Evil. #PKU #PKUday #PKUday2024
    #PKUlife #PKUdiet
    espku.org/projects/pku-day/

  5. International PKU Day today and the start of the summer holidays for our youngest child and PKUer. So she’s double celebrating with a pack of Wotsits and 6 Rowntree’s Randoms while bingeing Star Versus the Forces of Evil. #PKU #PKUday #PKUday2024
    #PKUlife #PKUdiet
    espku.org/projects/pku-day/

  6. Allo!
    Je viens de tomber sur ces craquelins Breton à faible teneur en protéines (0,1g pour 4 crackers), ils sont parfaits pour les PCUs ! 😊
    Si vous connaissez d'autres collations à faible teneur en protéines, n'hésitez pas à les partager ! 🍪
    #Phenylketonuria #Phenylcetonurie #PKUAwareness #PKULife #PKUDiets

  7. I’ve been watching Asian cooking (East Asian) and they use MSG. I was wondering if anyone knew if MSG was free/allowed for PKU folks?

    #pku #pkulife #pkucooking

  8. I somehow missed Rare Disease Day yesterday, 28th February, which is a bit of a faux pas for a carrier of a rare disease gene (Classic PKU) and a dad to a kid with PKU. I wouldn’t have missed it on the Other Site. Isolated communities excel at using Twitter to cohere around spotlight days or months. But in good news today I’ve found two other Mastodonians using the PKU #. Our rare community just grew a little. #RareDisease #RareDiseaseDay #PKU #phenylketonuria #Metabolic #PKUlife

  9. I somehow missed Rare Disease Day yesterday, 28th February, which is a bit of a faux pas for a carrier of a rare disease gene (Classic PKU) and a dad to a kid with PKU. I wouldn’t have missed it on the Other Site. Isolated communities excel at using Twitter to cohere around spotlight days or months. But in good news today I’ve found two other Mastodonians using the PKU #. Our rare community just grew a little. #RareDisease #RareDiseaseDay #PKU #phenylketonuria #Metabolic #PKUlife

  10. I somehow missed Rare Disease Day yesterday, 28th February, which is a bit of a faux pas for a carrier of a rare disease gene (Classic PKU) and a dad to a kid with PKU. I wouldn’t have missed it on the Other Site. Isolated communities excel at using Twitter to cohere around spotlight days or months. But in good news today I’ve found two other Mastodonians using the PKU #. Our rare community just grew a little. #RareDisease #RareDiseaseDay #PKU #phenylketonuria #Metabolic #PKUlife

  11. I somehow missed Rare Disease Day yesterday, 28th February, which is a bit of a faux pas for a carrier of a rare disease gene (Classic PKU) and a dad to a kid with PKU. I wouldn’t have missed it on the Other Site. Isolated communities excel at using Twitter to cohere around spotlight days or months. But in good news today I’ve found two other Mastodonians using the PKU #. Our rare community just grew a little. #RareDisease #RareDiseaseDay #PKU #phenylketonuria #Metabolic #PKUlife

  12. I somehow missed Rare Disease Day yesterday, 28th February, which is a bit of a faux pas for a carrier of a rare disease gene (Classic PKU) and a dad to a kid with PKU. I wouldn’t have missed it on the Other Site. Isolated communities excel at using Twitter to cohere around spotlight days or months. But in good news today I’ve found two other Mastodonians using the PKU #. Our rare community just grew a little. #RareDisease #RareDiseaseDay #PKU #phenylketonuria #Metabolic #PKUlife